When Katie Holt of Conway heard about the photo of Pope Francis tenderly kissing a man disfigured with neurofibromatosis, it touched her heart.
Holt, 22, has the same disease in a milder form.
“It’s a big disorder, and it can range from as good as what my condition is to as bad as what you saw with the pope,” Holt said. “These tumors can turn cancerous. We’ve actually lost a couple of our good friends because of it.”
Holt and her parents, Lesley and Connie Oslica, also of Conway, are involved in the Arkansas chapter of the NF Endurance Team to raise money for and awareness of the disorder.
A push is on to get people to join the team for the Little Rock Marathon on March 2.
“The main thing to know is it is such a common disorder; it is so big … one in 3,000 births,” Holt said.
Neurofibromatosis is a genetic disorder that causes tumors to grow on nerves throughout the body, including the brain and spinal cord. NF can lead to blindness, deafness, chronic pain, bone abnormalities, cancer and a wide range of additional complications, according to the website www.ctf.org.
Holt said she hadn’t seen the photo of the pope kissing the 53-year-old Italian man.
She said she was riding bikes with her boss, Dr. Anne Trussell of Conway.
“Katie, did you hear about the pope kissing that man with NF?” Trussel had said to Holt.
“And I said, ‘No!’ I thought, ‘Well, all right. That’s pretty neat,’” Holt said.
On one hand, it was sad, Holt said, but it also made her happy for the man.
“It’s that testimony — seeing that [the man] can stand up there and meet someone of that caliber. It’s a huge testimony of where he is,” she said.
Holt’s condition was a spontaneous mutation.
“No one in my family has it,” Holt said. “They diagnosed me at 9 years old. I had a tumor on my kidney and a little bit of scoliosis,” she said.
It would be upsetting for an adult, much less a child.
“I looked up at my dad upon having all these MRIs and blood scans and said, ‘Am I going to be all right?’
“He looked at me and smiled and said, ‘You’re going to be just fine.’ They are very supportive; they do so much in the NF community; it’s crazy,” Holt said.
Lesley Oslica is president of the Arkansas Chapter of the Children’s Tumor Foundation and was elected in 2013 to the national board of directors. The NF Endurance Team is one of the fundraising arms of the foundation.
Lesley’s husband, Connie, participated in a 3,022-mile bicycle ride, Race Across America, in 2011 to raise money for the foundation.
They’ve had a team in the Little Rock Marathon for “at least five years,” Lesley said.
“Our goal is to have 60 runners,” she said.
They want to raise $20,000, because that pays for an NF research project through the Children’s Tumor Foundation.
“It’s awesome to know every year that we fund a research project,” Lesley said. “We certainly have fast runners and slow runners and walkers.”
People who join the team can sign up to be charity fundraisers, she said.
“We also get corporate sponsors, if there are any businesses that want to support us,” she said. Sponsors will be recognized on the Arkansas page of the Children’s Tumor Foundation.
To join the marathon team, go to ctfarkansas.org.
Lesley said some people are confused about the fundraising.
“It is not mandatory,” she said. It costs $25 to register for the team, “and that’s all they really have to do.”
However, people are encouraged to set their own fundraising goals, whether it’s $50 or $500, she said.
If they don’t meet their goals, that’s OK, too, Lesley said.
“We’re encouraging people to make more out of their New Year’s resolutions and make more out of their miles by joining the NF Endurance Team to help children with NF,” she said.
One of the fun aspects of the NF Endurance Team is the finishers’ tent at the marathon.
“That’s what’s different about ours — we have a team finishers’ tent. We have a heater and cook burgers, and that’s where people can meet their family afterward.
“That’s our place to celebrate all of our accomplishments,” Lesley said.
Trussell is team captain and plans to run the half marathon.
She is owner of Sei Bella Med Spa in Little Rock and the physician at Arkansas Pain Management.
Lesley said she is impressed with Trussell’s commitment to the cause.
“Anne does it out of the goodness of her heart and has connected with all these families who have NF,” Lesley said.
“To me, that is so meaningful. I do it because I have a kid who has NF, and I would do anything possible as the parent.”
Trussell said she didn’t know anyone with NF when she got involved with the cause through a friend. Now, Holt is her receptionist at the med spa.
“You want to work for a charity that’s not just raising money but raising awareness,” Trussell said. “Everybody knows about breast cancer; everybody knows about Alzheimer’s.
“It’s $25 to join the team, and we have the best finishers’ tent with burgers and hot dogs,” Trussell said.
“Anybody who needs some encouragement out on the course, when I finish, I will go back there and run it or walk it back with them,” she said.
Holt said she will run the 10K in the Little Rock Marathon, the first time in four years that she has been able to participate.
A former horse trainer, Holt said, she was hurt after a horse bucked her.
Lesley said her daughter’s manifestation of the neurofibromatosis is not severe.
“With NF, people can live their whole lives and never know they have it if they have a mild case,” she said.
“Whereas, we have friends who are about to lose their children because of huge tumors on their organs.”
One of about six indicators of the disease, Lesley said, is café au lait spots on the body — hyperpigmented lesions that vary in color.
“I have café au lait spots on my arms, and people will say ‘Man, you’ve got a lot of freckles,’ and I’ll tell them my story,” Holt said.
“I had a tumor, and now I don’t, and God’s blessed me with where I am now,” she said.
The tumor on her kidney just disappeared, her mother said, which doctors said “just doesn’t happen.”
Lesley said children with neurofibromatosis have their tumors monitored for stability.
“You don’t really take them out because they’re on nerve endings,” she said.
Although Holt’s condition is under control, it could change.
“The biggest danger I want people to know — even though Katie is mild right now — at any time they could develop tumors in critical areas like their brain or spine,” Lesley said. “You just have to stay on guard; have your annual checkups.”
Lesley said her daughter still undergoes occasional MRIs.
Holt said she knows her condition could worsen.
“Yeah, yeah, it could happen,” she said.
Holt said that with women, hormone changes, such as pregnancy or menopause, can cause tumors to grow.
She said it helps to have a supportive family, which, in her case, includes her husband, David.
“I go around really positively,” Holt said.
Senior writer Tammy Keith can be reached at (501) 327-0370 or firstname.lastname@example.org.